Caregivers: Two Factors to Keep in Mind when Caring for a Cancer Patient

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Caring for a loved one going through cancer is taxing. You’re used to seeing this person as strong, independent and capable. For perhaps the first time, they’re physically weak, emotionally shut down and have a hard time pulling themselves up. They’re cranky when they used to be the most patient person in the world. They’re tired, they sleep a lot, they’ve lost weight, gained weight, they don’t want to eat their favorite foods, they can’t do what they used to...

And, worst of all, you can’t make things much better for them.

You try to be there, to help out in whatever way you can, to remind them of how great they’re doing, how much you care… But none of these change the fact that they’re still suffering. You can’t take their exhaustion, their nausea, their discomfort away. You perk up when you catch glimpses of their old self before fatigue takes over and they have to climb back into bed. Seeing cancer suck the life out of them makes you angry and it breaks your heart.

Because the word cancer is often equated with death, aka the ultimate out-of-control experience, there is a tendency to want to take back control. For caregivers, this can come in the form of doing too much or sometimes not enough. As a Medical Family Therapist, I learned that there are two important elements to keep in mind as the caregiver of someone going through a medical crisis like cancer.

Agency

The first is agency, defined as the ability for the patient to make independent and empowering choices about their life. If you’re feeling out-of-control as the caregiver, just imagine how your loved one must be feeling in their body. The last thing you’d want is for them to feel even more powerless over their situation. Provided they’re of sound mind to do so, decisions should be made by them, with them and along side them, rather than for them.

Choose your battles. Both of you are already battling cancer and that’s tiring enough. If they have a preference that’s irritating but nothing more, let them have their way. If they have a strong opinion about how they receive care, express your concerns but respect their wishes. Their life is still theirs even though it’s hard to watch because you want something better for them. They have their reasons for certain choices, even though you might not understand or agree.

Communion 

Aside from agency, a desire for communion, that is, a sense of belonging and being with their community, is also very important. Just because they disagree with you about what supplements to take does not mean you step away from their care all together. They might still need someone to fend for them at the next oncology visit, or you still make great company even though you’re doing nothing more than watching a show together.

Cancer patients often feel very alone, like they’re the only one going through cancer. While they may find that sense of camaraderie at support groups, you’re the one who has been there before cancer and now during cancer. You know they’re more than their cancer and you want to see them through. You’re the one who will love them through all of their changes and still find them beautiful.

Seattle resources

Caring for a cancer patient can be very isolating. It is important for you to pay attention to what you might be needing to sustain care. If you’re a caregiver needing support for yourself, Cancer Lifeline and Cancer Pathways are two wonderful organizations in the Seattle area with support groups for caregivers. There you’ll likely find others who also share your exhaustion, frustration, sadness, pain and guilt around caregiving. There you might also discover your need for communion during this trying time.

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Ada Pang is the proud owner of People Bloom Counseling, a Redmond psychotherapy practice in WA. She helps unhappy couples find safety and connection in their relationship. She also helps cancer thrivers and their caregivers integrate cancer into their life stories. You can find her at ada@peoplebloomcounseling.com.

Speaking up for Yourself as a Breast Cancer Patient

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October is breast cancer awareness month. While there’s often a lot of noise around screening and prevention, I want to talk about finding your voice when you’re at your oncology appointments. I work with a lot of breast cancer patients who wished they had requested this or asked that question during a medical visit, but it didn’t occur to them until after the fact or they may have felt unsure of themselves. And it’s difficult to broach that topic now that the appointment is over. 

Healthcare is changing

Gone are the days where doctors have all the authority and knowledge and patients come in and are told what’s wrong with them and how to fix it. Granted, I’m not saying don’t trust your medical team; they still have a lot to offer during a time of medical uncertainty. But, with the blessing and curse of search engines, you can easily look up symptoms, possible diagnosis, treatment and side effects, and seek medical consultation to confirm or deny your findings. While this might lead to misdiagnosis or unnecessary anxiety, now more than ever, patients are more likely to present at their doctor’s office looking more like this: “You recommended six rounds of chemo, but a recent study published in the New England Journal of Medicine found that women like me with early-stage breast cancer may not need chemo after all. What’s that about?”

Collaborative healthcare

The field of medicine has been calling it “collaborative healthcare.” As the name suggests, every time you go into your doctor’s office, it is really meant to be a collaboration, a partnership to a healthier you. You’re the one who has been living in your body for the past however many years; you’re the one who knows your medical history or have the means to find out whether there has been a history of cancer on either side of your family.

As a patient, you have something to offer too.

The thing is, when you feel heard, understood and your questions answered, you’re more invested in your treatment, and you’re more likely to follow recommendations that make sense to you. While you might not be thrilled about treatment itself, you can look forward to seeing your medical team because you know they care about you and have your best interest at heart.

Current reality

The reality is that there’s still a power differential between the provider and the patient. Your oncologist did go to med school and further specialized in cancer. Your degree was in business; not oncology. There is a firehose of information shared during appointments and on handouts, not to mention the emotional turmoil of needing to go through treatment. As a cancer patient, you are at a more vulnerable place. Rather than being told you need to jump and how high, this is a crucial time to find your voice and feel empowered about your own care. It is after all your body.

A push for self-advocacy

Because you’re such an important part of the treatment process, I strongly encourage you to advocate for yourself. If you’re not in a place to do so, bring a friend or a family member with you who could. The following are examples of ways to help you find your voice as you interact with your oncology team:

1. Do a little research, if that could help you – Emphasis on “a little”. Google does not replace medical school and decades of experience, but credible websites can help to learn a little about what might be going on with you. I say this with the caveat: for some people, knowledge is power. For others, knowledge is anxiety. Still for the rest, knowledge is power up to a certain extent, then it turns into anxiety. So, do what helps you.

2. Know your rights as a patient – This is the two page handout I call snooze reading. You can pick one up at any healthcare provider’s office and it shows you your rights as a patient seeking medical care. To name a few, you have the right, according to your local health department, to say yes to treatment, to say no to treatment, to change providers, to have access to records, to file a complaint, etc. You have more rights than you know. While you might fear ramifications for some of these actions, the stress of not being in charge of your own care could be worse.

3. Read your reports – It’s a lot of medical terminology, I know. Unless you’re also in the medical field, it can read like french. That’s the beauty of Google, you can search for terms, struggle to know what it really means, then proceed to 3) and 4). I know an oncologist who thanks his patients for reading their reports, because many people don’t.

4. Come with questions – You do have questions, even if you’re afraid of the answers. Your $135 visit with your surgeon is the best time to ask them. I know of a patient who goes to her appointments with her list of 20 questions. And, she brings her partner to catch the answers that goes over her head. Better to ask a silly question than to wish you had asked it after the fact.

5. Ask follow-up questions – Even for the over-prepared, there’s bound to be questions that are left unanswered. Secure message your doctor’s office in between appointments; you don’t have to wait until your next visit, unless your appointment is soon and you’d prefer a face-to-face.

6. Ask yourself, “What do I need or want?” – Being diagnosed and treated for cancer is a very uneasy time. Your world has just been overhauled. It’s okay to ask for what would put you at greater ease. Could a warm robe bring comfort during your next check up? A blanket during your four-hour chemo? Do you want to bring your special stuffed animal to every radiation treatment? Request a certain radio station during your MRI?

7. Ask for what you need or want – As you come upon your preferences along the way, share them. Make it happen. I know someone who asked for a surgical pen so she could go home and mark on her husband. Cancer is hard enough; let’s bring some lightheartedness into the mix.

Cancer has a way of prompting us to re-evaluate life, which could include finding your voice. You’ll never have as much medical attention given you than when you’re in active treatment. While it’s not necessarily the attention you’d like, let it be a time when you can focus on you.

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Ada Pang is the proud owner of People Bloom Counseling, a Redmond psychotherapy practice in WA. She helps unhappy couples find safety and connection in their relationship. She also helps cancer thrivers and their caregivers integrate cancer into their life stories. She’s a big proponent of standing up to your medical provider, even if it’s uncomfortable in the moment. After all, when you’re already diagnosed and treated for cancer, what do you have to lose? Please take care of you.

Body Image after Breast Cancer – Boobies Then & Now

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I've been doing a breast cancer series on the messy feelings of cancer and the fear of reoccurrence. Another common theme I see facing cancer patients is the feeling of being "disfigured or damaged" after breast cancer treatment. 

Society's narrow definition of femininity

Let’s be honest here, our society has a general opinion about what constitutes femininity: thick lush hair and curvy body. There’s also something about a wrinkle-free forehead, better shaped brows, longer and thicker eyelashes and the list goes on. Wait, I should mention the many push-up bras and what?! A padded underwear? I had to look that one up. Needless to say, isolate any one of your body’s features and there’s a product or service to sell you because what you got, ain’t good enough. And that was pre-cancer.

Your body pre-cancer

You might not have bought into all the lies about what makes a woman beautiful, but let’s face it, none of us are immune to it. Whether you were satisfied with your body pre-cancer, or you were struggling with your body image, cancer treatment will rock your world.

Breasts

Boobies. You’ve got two of them, like you do two eyes, ears, hands, feet. No matter their shapes and sizes, they are visible to you, day in, day out. You look at them and they are a pair, a two-some, partners. As a society, we are fascinated with them. We are told they look better full (with no account for the back and shoulder problems they cause), symmetrical, and lifted and firm, and soft and supple to the touch. Aside from the visual aspects, women who became mothers and nursed their babies spoke about providing to their child nutrition, protection from illness, and a connection that, without one or both boobs, might be hard to rig up.

Breast surgery and radiation

In comes lumpectomy, single or double mastectomy and you lose fullness, symmetry and the ability to nurse on one or both sides. Radiation destroys breast tissue and often makes your breast more firm or “rubbery” in the long-run. Radiation also damages the milk ducts; stories of women who were able to breastfeed on that side are anecdotal. Whatever your boobs have meant to you, it’s time for a re-definition.

Breasts re-defined

Your boobies are yours. You’ve had them and you grew up together. You were on the monkey bars, went on field trips, pulled all-nighters, traveled, and shared them with someone you love. They might not have turned out the way you hope they would, but they were loyal to you and stuck by you through thick and thin. Now, they’re sick. Your good friends have fallen ill. Cancer cells are growing inside of them and in order to save your life, you have to bid goodbye to one, both or subject one to radiation. It’s hard to see them go or suffer. It’s like you’ve taken them for granted all this time. You don’t remember the last time you’ve given them close attention, complemented them or told them you love them just the way they are.

Post treatment and your boob(s) might no longer be there. If there, it has changed form and you’ve seen it suffer through the burn and rash of radiation. Whatever the state of your boobies, the soul of your boobies are still there. That spirit of love and companionship is still there. It has never left. If anything, it has grown stronger. You and your boobies have braved a very courageous endeavor, together. And, like before, you will continue forward, together. Whether you decide to seek reconstruction or not, it doesn’t change the fact that the spirit of your boobies live on. While your baby might have limited experience with nursing, you will bond with your child and they can learn all about your boobies, from you.

Compassion for your body

I don’t mean to be weird here; I’m speaking about self-compassion. Pre-cancer, people are often living busy lives, lugging their bodies around, subjecting them to caffeine overload, dehydration, stressful days and little sleep. We take our body's functions for granted, until something happens to them, then we give them attention. What if we take better care of our bodies and show more appreciation for our body’s features? What if we take the time to accept them rather than spend so much time covering them up, changing them, and rejecting them? What if we care for them, now?

Going forward

Just when I thought I could write one post on body image, I talked all about boobies. I will have to write a sequel on having a healthy relationship with the rest of your body post cancer treatment. In the meantime, if you are a breast cancer thriver and you need help extending compassion to yourself and caring for you, let me know!

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Ada Pang, MS, LMFT is the proud owner of People Bloom Counseling, a Redmond psychotherapy practice in WA. She helps distressed couples and breast cancer patients. That can also mean couples distressed by a partner’s cancer diagnosis, or couples wishing to use their marriage as a resource during their cancer journey. When she’s not at work, she has found yoga to be a wonderful practice to nurture self-compassion. 

You've Got Cancer? What shouldn't I do?

Wanna make someone feel worse when they've cancer? Here's how:

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1. Talk even when you don't know what to say - Years ago when my friend's wife was diagnosed with leukemia, his buddy didn't know what to say, so he said this: “Man, at least you get to marry another woman...”

2. Begin your sentences with “At least” - If you want to minimize one's experience with cancer (or anything for that matter) and remind them how much better they have it compared to people in Syria, the words, “at least” is the way to go.

3. Tell them you understand when you really don't - A patient has taught me I can only guess or imagine what it's like to be in their shoes; to say that I understand when I've never been can be a real put off.

4. Share about your aunt's cancer story, and your grandma's... - Not to say there isn't a time and place to share cancer experiences, but just because you have a story to tell does not mean the one with the cancer wants to hear it. It helps to ask first.

5. Expect that things are back to normal post-treatment – Meal delivery is over, hair is growing back, party pics made it on FB, life's back to normal, right? Cancer brings a new normal. While it might not be your job to constantly remind the other of their cancer, just know that this is only the beginning of the journey.

Here's an earlier post on what to do instead. 

And if you need help navigating through all this, give me a call!

You've Got Cancer? What can I Do?

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Ever wonder how to approach a friend, a loved one when they are first diagnosed with cancer and going through treatment? Here's my first post on what to do. What not to do will come later...

1. Do nothing – Gotcha! Sometimes there isn't anything to do but to simply be with that person.

2. Validate – Let them know that it must be very hard for them... You can't imagine... This really sucks!

3. Offer company – Sometimes in our not knowing what to do, we disappear. Offer your presence, hear them out, hang out.

4. Talk about something else – Cancer can be all consuming. While it might be important to give cancer its spotlight, let's also move onto something else.

5. Offer help – What can you do? What can be helpful? Want a ride to an appointment? Oil change? Go to a ball game? 

6. Set up long-term help – It's hard to ask for ongoing help, let alone when you're emotionally overloaded. Assuming you know your friend, you can set up meal delivery, house cleaning, and baby sitting, email treatment updates, etc. 

7. Bring comfort - Cancer treatment is unnerving for the human body, in more ways than one. Find out what will bring comfort to your loved one and do it! Is it a particular type of food for the foodie, flowers for the visually stimulated, or a card for the, um, card person?! 

8. Use humor - Break up the monotony! A friend recently told me this was the funniest thing she had said to her while going through treatment: “Well, you're the healthiest looking sick person I've ever seen!” Sure, be sensitive, but know that cancer patients need to laugh too.

9. Touch - Cancer can make your loved one feel like their body is damaged. Don't be afraid to offer touch. 

Help need walking your loved one through cancer? I'm here!